Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

April is Sjögren’s Awareness Month!

Posted on Sat, Apr 01, 2017

SSF This Is Sjogren's.pngApril is Sjögren’s Awareness Month! To portray the entire patient experience, in our This Is Sjögren’s Awareness Campaign, the Sjögren’s Syndrome Foundation (SSF) is drawing facts and figures from our recent “Living with Sjögren’s survey findings. This survey, which was conducted by Harris Poll on behalf of the SSF, gave the Foundation amazing data about how patients’ lives are affected by Sjögren’s, what symptoms and complications patients live with and how the disease affects their emotional and financial well-being. 

The independent nationwide survey, designed by Harris Poll along with the SSF and a volunteer committee of patients and healthcare providers, was mailed to Foundation members in the spring of 2016. Nearly 3,000 adults shared their experiences with the disease and its physical, financial and emotional effects on their lives.

With the support of our members, this survey was developed to help the SSF:

  • Educate regulatory agencies and pharmaceutical companies about a need for a therapeutic drug for Sjögren’s
  • Support the need for additional SSF Clinical Practice Guidelines (CPGs) for how to treat and manage Sjögren’s
  • Provide researchers with information about the variety and severity of experiences patients have with Sjögren’s
  • Create greater awareness of this disease among consumers and healthcare professionals

Every day this the SSF is sharing a fact from these survey findings or other information about the disease on our social media accounts to show: This is Sjögren’s (#ThisIsSjögrens)! While the daily post give a small glimpse into Sjögren’s, by the end of April, we hope these 30 posts will show the complexity and seriousness of the disease. SSF_17114.03-4-2.png

How Can You Get Involved:

We encourage you to use April Awareness month and our #ThisIsSjögrens social media campaign, as a way to talk about Sjögren’s with your family and friends. Every post is an opportunity to start a conversation about living with Sjögren’s and how it affects you. The more others understand, the more support you can find. And know that we at the Sjögren’s Syndrome Foundation are here for you! We are committed to accelerating the development of better diagnostic, management and therapeutics that will have the greatest potential impact on improving the quality of life for Sjögren’s patients. Together, we will transform the future of Sjögren’s!

SSF This Is Sjogren's April 2017.jpg

Click here to view our daily  April Awareness campaign on Facebook!

 

Topics: coping with sjogren's, Advocacy, Men with Sjogren's,, Children with Sjogren's,, April Awareness Month, #ThisIsSjögrens

Sjögren's Awareness Month is Almost Here!

Posted on Mon, Mar 20, 2017


ATT00002.pngApril is Sjögren's Awareness Month and we hope you will join us in educating the public about this complex disease and how it affects those who are living with it.

Sjögren's is often described as an invisible illness because many of the disease’s debilitating symptoms cannot be physically seen. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with Sjögren's. 

This April, the SSF is going to build upon our This Is Sjögren’s campaign from last year! Our goal is to help others visualize the disease from a patient’s perspective, and close the gap between the reality of Sjögren’s and the perception that many non-patients have with Sjögren’s! 

To better portray the entire patient experience, in our #ThisIsSjögrens 2017 April Awareness campaign, the SSF will be drawing facts and figures from our recent national patient survey. This survey, which was conducted last year, has given the SSF amazing data about how our patients lives are affected by Sjögren’s, what symptoms and complications patients live with and how the disease affects their emotional and financial well-being!  

Each day, throughout April, the Foundation will post a different #ThisIsSjögrens factoid or patient phrase on social media – so stay tuned! And while the daily post will give a small glimpse into living with Sjögren’s, by the end of April, we hope these 30 posts will show the complexity and seriousness of the disease.

Let Your Voice Be Heard!

SSF This Is Sjogren's.png

As the voice of the SSF, we want to hear form you! Please comment below and share with us one phrase that represents what it’s like to live with Sjögren’s. Thank you for your support; together we will transform the future of Sjögren’s.                                             

Example: Sjögren’s means choosing a medication that will help with my fatigue and joint pain but knowing it will make my eyes drier and more painful. #ThisIsSjögrens!

Topics: coping with sjogren's, Advocacy, April Awareness Month

How to Talk With Your Family about Sjögren’s

Posted on Thu, Dec 15, 2016

There is a growing body of evidence that rich social support networks are important to overall health, immune function and healing. They improve quality of life and facilitate coping with chronic illness. Conversely, negative social interactions create a stress response that have the opposite effect. Support from family members and close friends can be one of the most important resources for you to draw on when dealing with Sjögren’s. Skillful communication about your illness is key to nourishing the relationships that matter the most to you. This article only attempts to skim the surface of this complex topic. 155698-350x233-talking-with-doctor.jpg

Three characteristics of Sjögren’s create particular communication challenges.

1. Untimely: Sjögren’s is typically diagnosed in the prime of life (40s and 50s), when family responsibilities and careers are in full swing.

While some are lucky enough to have mild symptoms, the majority of patients experience flu-like fatigue, pain and brain fog that demand a new, strict energy budget. Jobs may be lost or hours cut. Frequent medical and dental visits and costly products such as artificial tears strain both schedules and finances. Family dynamics are rearranged by the illness, causing stress, especially if there is little support or strong disagreement about how to meet the new challenge. Single people who become ill may feel particularly vulnerable and alone, wondering how will they ever manage.

2. Uncertain: Early on, many patients have a hard time accepting that this disease will be a lifelong challenge. The sense of loss and fear of long term illness can be profound for both patients and loved ones.

Symptoms may wax and wane for no obvious reason, although they rarely disappear. This can add to confusion and denial. The initial focus of patients and family members is often “how can we x this?” Denial can make adjustment to a new normal even more protracted. Sometimes denial persists for years, until it becomes clear that medications and other interventions cannot bring back “life as usual.”

3. Invisible: Sjögren’s patients tend to look well most of the time, even when feeling quite ill.

The outward appearance of normalcy can make it hard for others to appreciate the severity of your illness. This is made worse when doctors don’t address symptoms such as fatigue and pain that make it a struggle to get through the day. Even though Sjögren’s is quite common, most doctors are not trained to recognize even typical systemic symptoms, and tend to focus on dryness. Some medical websites reinforce this incorrect notion that Sjögren’s is mostly about dryness, rather than a serious systemic disease. When presented with this inaccurate portrayal of the disease, family members and patients become understandably confused. Healthcare providers frequently minimize life-changing symptoms or even become dismissive, leaving the patient feeling powerless or invisible. When family members also fail to understand the devastating impact that Sjögren’s can have, the emotional turmoil can be overwhelming.

As a result of widespread misinformation, patients find themselves needing to become “experts” in their disease. Backed with up-to-date knowledge, it is possible to advocate for care and educate health care providers when needed. An excellent, reliable source of information can be found at the Sjögren’s Syndrome Foundation (SSF) website, www.sjogrens.org. Be sure to read or reread the “About Sjögren’s” section, especially the FAQ. Encourage family members to read it too. It’s really good. It might seem overwhelming and a bit disheartening that you need to learn so much about Sjögren’s, especially early after diagnosis. However, educating yourself will provide essential tools for communication with family, friends and doctors.

Communication with family members

Spouses/partners and other family members suffer grief and loss too. It is important to acknowledge this. Open the discussion early. Ask about their fears regarding the impact of your illness and the uncertainly it creates. Be prepared to revisit this conversation several times. Both you and your significant others will go through loss and grief, although the timing and process is different for each individual.

In spite of your best efforts toward clear, empathic communication with your family, some people may respond with judgment and blame. This often comes as a painful surprise, especially at a time when support feels most needed. Relationship upheaval is typical for people with serious illness. It is important not to blame yourself for the illness, but to develop good self-care with an attitude of deep kindness toward yourself. Attempt to keep lines of positive communication open, but set boundaries to protect yourself from negativity.

While unsupportive family members may eventually shift their stance, the approach of trying to educate them repeatedly after several unsuccessful attempts will only result in unnecessary pain. Just having one or two people in your life who truly “get it” can be enough. Recognize that some people may be good at practical support, but unavailable emotionally. The reverse may also occur.

Practical support tips

Practical support, especially from family members, can go a long way in helping you manage your health. Most Sjögren’s patients can participate in a number of activities, especially when family members take over tasks that are particularly challenging for you to do. It takes some trial and error to learn what you can do without compromising your health. Being a good observer of your unique patterns will help you plan the types of activities and pacing that works for you. Even with careful planning, the unpredictable nature of Sjögren’s will sometimes knock you down when you don’t expect it. It is always good to have a backup plan ready- and soup in your freezer!

Many people are happy to help, but might not ask or could assume you are doing ne if you have a partner or other adults in the home. It can be difficult to ask for help, especially if you are the “can do” type of person. It is good to remember that providing support can be beneficial to both givers and recipients. Sometimes support arrives from people you don’t expect to come through, while those you think of as close friends or family may not provide support.

Examples of useful responses and communication tools

  ♦ If you are unsure of a person’s awareness or interest, you can ask: “I’m not sure how much you know about Sjögren’s- do you want to know more about what’s really going on with me?

  ♦ When someone asks if they can help, try to be ready with a specific request such as stopping by with dinner, running errands, childcare, etc. If you are caught off guard, a good response might be: “Can I get back to you? I could really use help but I am feeling too overwhelmed to think about it right now.”

  ♦ State your limitations and needs, clearly and without apology. If you are too tired to cook, shop or clean, state that and request specific help from household members. For example: “I’m not well enough to do housework right now. Could you please vacuum and clean the bathrooms once a week?” as opposed to the more vague, “I need more help with the cleaning.”

  ♦ Many people go into advice giving mode, offering instant remedies such as the latest diet, various medical regimens, healers etc. This may be motivated by a true desire to help, or it can be a way to distance themselves from your experience. Some possible responses: “Thanks for your concern, I am working closely with my doctor on this,” or “I appreciate your concern. I need to do this in my own way and in my own time. It would be great if you could support my choices.”

  ♦ Dealing with insensitive and judgmental comments, especially if repeated, is difficult. One strategy is to provide the speaker with an opportunity to consider the hurtfulness of their comments, by asking: “Let me understand. Are you saying (repeat hurtful comment)?” The person may back pedal or give their comment more thought. This does not always work. Here are examples of responses to real life comments:

  ♦ “If you just stopped taking all those medications, you would be fine.”

  ♦ Response: “What I’m hearing you say is you think Sjögren’s is not serious enough to require medication.”

  ♦ “If you would exercise/lose weight/eat paleo etc. you would be fine.”

  ♦ Response: “Do you think if I (fill in the blank) my Sjögren’s will go away?”

  ♦ To a more subtle comment insinuating you are not trying hard enough: “I’m hearing you say that if I tried harder that I could do _______ (fill in activity) and still manage my Sjögren’s symptoms.”

  ♦ If responses like this do not work, set boundaries: “It hurts to hear you say this. I am doing my best. Please keep these comments to yourself.”

It can be especially difficult when someone close to you clearly does not understand your illness or support your efforts to take care of yourself. Relationships that were difficult to begin with may become even more painful. Some relationships do not survive the stress of chronic illness. Family members have a limited capacity for emotional or practical support. If you don’t feel supported by those closest to you, being creative about organizing your life, getting support from others, and setting excellent boundaries may be your best strategy. If you are dealing with a close relationship that seems to be faltering, it can be helpful to seek professional support from someone knowledgeable about chronic disease.

Most importantly, know that the news here is not all bad. Many people do step up to the plate, although they may need prompting. Be patient if they are trying to understand; it takes time to adjust and to learn about Sjögren’s. 

by Sarah Schafer, MD and Sjögren’s Patient
Special acknowledgment to Teri Rumpf, PhD and Julia Oleinik, RN for their contributions to this article

This information was first printed in The Moisture Seeker, SSF's member newsletter

Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member

Topics: Depression, Sjogren's, Treatment, coping with sjogren's, Advocacy

Proud to be Your New Chairman!

Posted on Mon, Sep 26, 2016

Cohen20portrait20201420-120-20Copy.jpg

I am honored to be the new Chair of the Sjögren’s Syndrome Foundation’s (SSF) National Board of Directors. Having served on the Board for the past five years, I have seen first-hand the incredible work being done by the SSF and the impact the Foundation has made on the lives of those living with Sjögren's.

As a practicing optometrist for thirty years, I have had the pleasure of holding leadership positions in numerous community and professional eye care organizations. With all this experience, I can confidently say that there is something truly different about the SSF. The CEO, Steven Taylor, has built an organization in which the volunteer board and the professional staff work together in an efficient and cooperative way. He has engaged hundreds of volunteers from across the country to help increase awareness, raise funds, lead events and promote the work of the SSF. He has established a Board that is made up of a combination of patients, family members of patients, doctors, along with others who have an interest in the disease. The SSF staff never treats their work as a job, but rather as a calling to make a difference in the lives of those struggling with this devastating disease.

The SSF works in many areas to ensure that no stone goes unturned and that every program and project is evaluated with the patient in mind! The SSF has a strong advocacy and research arm that is working with pharmaceutical companies to develop a therapeutic for Sjögren’s. Recently, the SSF held an introductory meeting with the FDA to help launch an ongoing dialogue about clinical trials for new therapeutics in Sjögren’s. In addition to this work, the SSF also has brought together professional leaders in all areas of care to produce and publish the first-ever Sjögren’s clinical practice guidelines that doctors can now use as a roadmap for how to appropriately care for Sjögren’s patients. And our strong focus on educating patients and their families can be seen by our annual national patient conference and our more than 65 patient support groups in the United States.

As Board Chair, I am honored to be representing all Sjögren’s patients. I am truly proud to be a part of this outstanding organization and hope you’ll join with me by supporting the SSF. TOGETHER, we can continue our momentum and improve the quality of life for all those who suffer with Sjögren’s!

SSF_Board.png


Click Here to  Become an SSF Member

Topics: Dry Eyes, Sjogren's, Advocacy, Research, Clinical Trials

Meet the Sjögren's Syndrome Foundation!

Posted on Tue, Jun 21, 2016

SSF_2015.jpgWho is the Sjögren’s Syndrome Foundation?

The Sjögren's Syndrome Foundation (SSF) is proud to be the only national non-profit organization focused on increasing research, education and awareness for Sjögren's. Founded in 1983 by Elaine Harris, a frustrated patient, the SSF’s mission was simple: help patients cope with their Sjögren's, increase awareness, and support research efforts. 

Today, under the leadership of Steven Taylor, SSF CEO, our mission has remained the same while we have grown into a multi-faceted organization that has expanded its outreach, increased its funding for research, education, and awareness of this debilitating disease. In addition, the Foundation is an internationally recognized organization shaping the industry in terms of research, education, patient care, advocacy and new therapies. 

As the SSF continues to expand, our commitment to patients will never change; they are the reason we were founded and the reason we continue to operate today. 

Elaine_Harris.png Elaine Harris, SSF Founder, at the 2016 New York City Sip for Sjögren’s Event

What is Sjögren’s?

Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas.

Today, an estimated 4 million Americans suffering from Sjögren’s, both men and women of different ages and ethnicities.

Men_with_SS.jpg   This_is_Sjogrens.-1.jpg

Click here to learn more about the  Sjögren’s Syndrome Foundation

Topics: Sjogren's, Advocacy, Men with Sjogren's,

This is Sjögren’s!

Posted on Fri, Apr 01, 2016

AprilisSjogrensAwarenessMonthToday begins Sjögren’s Awareness Month and for the next 30 days we will use your words to help raise awareness of this debilitating and complex disease.

You are the voice of the Sjögren’s Syndrome Foundation, which is why last month we asked you to share with us one phrase that represents what it is like to live with Sjögren’s. Everyday in April we will post a different one of your phrases on social media that reflects living with this invisible disease.

Each phrase will give a small glimpse into the life of Sjögren’s patients and by the end of April, we hope these 30 phrases will help others better visualize and understand the disease. 

We encourage you to follow us this April and look for opportunities to share how Sjögren’s has impacted your life. Remember that by talking with one person at a time, one community at a time, one physician at a time and one company at a time – together we will reach our goal and conquer Sjögren’s!  

This is Sjögren’s!

#Day1: I look healthy on the outside, however my disease is attacking my internal organs and destroying me from the inside out. #ThisIsSjögrens #SjögrensAwarenessMonth #TheSjögrensJourney

This_is_Sjogrens.-1

Click here to view our daily  April Awareness campaign on Facebook!

What is Sjögren’s?

Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas.

Today, as many as four million Americans are living with this disease and nine out of ten patients are women with an average age of onset in the late 40’s. However, Sjögren’s can occur in all age groups, even in children.

 

Topics: Symptoms, Sjogren's, Advocacy, April Awareness Month

The TIME is NOW – SSF Plans for 2016

Posted on Mon, Jan 11, 2016


ssf_logo

Happy New Year! 

As many of you know, the Sjögren’s Syndrome Foundation (SSF) has been methodically working towards making the lives of Sjögren’s patients better! Thanks to the dedication of our Board of Directors, our staff and hundreds of volunteers, the SSF has been actively working on our overall strategic plan to make Sjögren’s a household name, increase treatment options for Sjögren’s while also helping to educate healthcare professionals on how to treat and manage Sjögren’s.   

Last year was a banner year for the SSF but 2016 is already proving to be even more exciting! There is still a lot of work to be done, but we know with the help of you, our volunteers and our staff, we are going to see great strides in many areas for Sjögren’s.

The time is now and here are just some of our plans for 2016:

  • Continue to expand the SSF’s Clinical Trials Consortium (CTC) and encourage the development of therapies for Sjögren’s. The SSF’s CTC works alongside companies that have compounds/ molecules currently under review for clinical trials in Sjögren’s. We help these companies better understand the disease, our patient community and encourage them to develop a treatment. In 2016, we plan to see more than 10 clinical trials started for a Sjögren’s therapeutic that will treat the entire disease, not just one symptom! This work of our CTC has been years in the making and we are most excited about how a therapeutic will be a game changer for Sjögren’s!
  • Expand our focus of educating all healthcare providers about the severity of Sjögren’s and its numerous manifestations by attending professional conferences, speaking to healthcare organizations and utilizing the SSF’s Awareness Ambassadors to expand our reach into physicians’ offices by educating them about the SSF and our resources.
  • Work alongside the FDA to help them understand the need for Sjögren’s therapeutic and educate them about the severity of Sjögren’s.
  • Fund new and innovative research that will lead to new biomarkers, diagnostic tools and learning what causes Sjögren’s through the SSF Research Grant Program. The SSF also will work with young investigators to encourage and recognize their work, in hopes that they pursue a career in Sjögren’s.
  • Continue the peer review process for our Clinical Practice Guidelines on the systemic manifestations of Sjögren’s. Our committee of rheumatologists will continue to focus on writing recommendations for how to treat and manage the 16 systemic manifestations that we identified need guidelines. These include fatigue, joint pain, lymphoma, internal organ involvement, etc.
  • Conduct a comprehensive national patient survey to gather crucial information about the numerous complications patients experience as well as the burden of the illness and their quality of life. The SSF is partnering with Harris Polling, a division of Nielson, to develop this survey with plans of distribution in late February. The findings of our survey will help the SSF, as we represent the patient voice and advocate for all Sjögren’s suffers.
  • Further our support of patients, family and caregivers through our website, patient materials, monthly patient newsletter as well as new resources we are developing for 2016.

 And in the few short days of 2016, the SSF has already seen two major accomplishments:

So as you can see, the time is now and the SSF has big plans for 2016! The progress the SSF continues to make and the recent advancements in Sjögren's research and awareness speaks to the combined efforts of hundreds of volunteers. It is because of their willingness to share their story, attend our events, volunteer their time, donate to the SSF, we are helping to create a future of hope for all patients and their families. s_taylor_headshot-1copy-1

It will take an army to achieve our plans for 2016, so I hope you will consider stepping up and getting involved! The Time Is Now!   

Sincerely,

Steve_Sig
Steven Taylor,
SSF Chief Executive Officer

Click Here to Learn More Ways to Connect with the SSF!

Topics: Treatment, Advocacy, Research, 50in5: Breakthrough Goal, Clinical Trials

How I Found a New & Happier Life with Sjögren’s

Posted on Thu, Oct 15, 2015

My Sense of Humor is Dry, and so is Everything Else! I’ve always had a dry sense of humor coupled with an optimistic personality. But I must admit, when I was diagnosed with Sjögren’s, it took me quite a bit of time to go through the grieving process and create a bold life with my sense of humor intact.

I love those stories about people who are able to accept the diagnosis and immediately say, “Sjögren’s, I may have you but you will not have me.” That was not my experience. In fact, I found that that more I challenged my Sjögren’s, the more it did have me!

JanetLike all of you, I now can look back and pinpoint when I was presenting early Sjögren’s symptoms. My early symptoms began in 1997 as ongoing sinusitis and exhaustion. For a decade, symptoms escalated until I was hospitalized for two weeks.  Nine-months after my hospitalization I was finally diagnosed with Sjögren’s January 2007.

I was relieved to have the diagnosis and excited to look Sjögren’s in the face and tell it, “You will not have me! I am a fighter, an optimist, a model patient and I will knock you down.”

Although it turns out a fighting attitude was not what I needed and it took three years for me to find my way after my diagnosis. I was fighting Sjögren’s to regain my “old self” and my previous life. What I needed was to love and embrace my Sjögren’s in order to see my “whole self,” accept my previous life as a point in time, and find my “new self.”  After all, I was young with a lot of life in front of me. It was time to explore new aspects and add to the journey.

Here are my big revelations about what worked for me. Perhaps you can find some tips for yourself or for a newly diagnosed friend.

I embraced my disease instead of fighting it
Instead of imagining an internal army kicking the sh** out of Sjögren’s (as my friends who had successfully killed cancer had suggested), I found the imagery of embracing my Sjögren’s to calm it down was what finally did the trick. 

I think of my Sjögren’s as a small girl who is tired and acting out (and yes, I recognize the “inner child” similarity here). I finally realized that I was already attacking myself and launching emotional attacks to combat Sjögren’s was perhaps adding fuel to the fire.  So I tried the tender approach. To me, this was different than the adage “be good to yourself” or “be kind to yourself.” I imagined that the little girl dwelling inside of me was a separate person that I needed to care for. She is not mean or weak, she is in fact strong and confident, so she requires special attention.

If you are a person who tends to take care of everything and everyone around you, then this imagery might work for you too. After a few years of practicing this imagery, I now can take a short-cut and just “be good to myself.”

I didn’t make my world too small
There have been times when I focused mostly on Sjögren’s and what I could not do.  I found that my world started shrinking and became quite small. That was not the life I wanted so I had to train myself to think of all the things I CAN do. Along the same lines, I started asking the question “Why Not?” instead of “Why.” Try it, it’s a good practice!

Beauty & Nature Matter
I moved Sonoma, CA wine country in order to have natural beauty surround me. Not everyone can pick up and move, but everyone can take a nature walk. Be still in nature and soak in what you find beautiful.

I feel the same about the beauty and healing powers of music and art! I listen to new music and dance while making dinner almost every night. 

Work and productivity
For years, I managed my work time and stress by consulting on a project basis.Two years ago I co-founded a software company and was concerned about the workload, but I have been fascinated at how well I feel! I don't work the crazy hours of my youth, and I don't see that as a shortcoming.  I know my experience and wisdom (no longer sweating the small stuff) is more valuable to the company than extra hours. Even though I have periods of exhaustion, I’m actually feeling the best I have ever felt with Sjögren’s. 

Because I am challenged and doing something I believe I’m good at, I believe my Sjögren’s is better controlled. I do have to manage stress and discipline myself to not “power through” things, which makes me feel worse. But this is all part of taking better care of myself and knowing the right work-life balance. You might find that managing your best work-life balance can help you too!

“No” is a complete sentence and it’s ok!
If you are a person who has taken care of many people and many things, it’s time to look at that. Sometimes it’s a good thing and sometimes it crosses over into something else. Try letting go of the “something else.” It’s also time to let go of feeling bad about it! 

Be a Good Friend
My friends have had my back when I was not doing very well.  In fact, a couple of friends certainly gave more than they received for a few years. One day I asked myself “Would you want to be your friend?”  I didn't like the answer so I vowed to be a good friend to those I love. In order to do that, I had to relinquish a relationship that took too much negative energy so that I had positive energy for those who lifted me up. I still make new friends, but I manage my energy and time well.

Give Back to Something
Find what is important to you and give some time to it. Although make sure you are using positive energy and that you’re not pushing beyond your limits. I have several community things I support, but being on the Board of the Sjögren’s Syndrome Foundation brings me great satisfaction.  It combines three things for me. First, my desire to know more about the disease. Secondly, my desire to speed research for a cure. Finally, my desire to help others understand and deal positively with their Sjögren’s

I have been amazed at how much the SSF actually accomplishes on our behalf and I know we will accomplish our 5-Year Breakthrough Goal of shortening the diagnosis time 50% in 5 years. I am proud to be part of making that happen for our community! 

Sleep, Exercise, Food & Wine
Sleep is my best tool! I go to sleep when I’m tired and wake up when I’m ready. And exercise is something that always makes my joints feel better. 

I love food and wine. I feel my best when I eat an organic diet of fruits, vegetables and proteins, exercise daily and steer clear of carbs and sugar (which includes wine). But I live in wine country for goodness sake so I’m going to drink wine. I do so many things “right” so that I can enjoy a glass of wine when I like (preferably a really good Pinot Noir, with really good friends).

Today, I have my Sjögren’s in steady order by taking pretty good care of myself and making sure I balance all things in my life that define, for me, a bold life. Now I work smart and play smart. I do have daily symptoms that I stay on top of, but I simply accept them as part of my life now. Just like aging. And menopause. Good thing I’ve got my sense of humor back to deal with that!

This article was first printed in the The Moisture Seekers, SSF's patient newsletter for members.

Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member

 

PS: I lifted the first line of this article from fellow SSF board member Dr. Herb Baraf, who at our last Board of Directors meeting stated, “The SSF, even our sense of humor is dry.”  Funny man!

Topics: Depression, Sjogren's, coping with sjogren's, Advocacy, 50in5: Breakthrough Goal

Sjogren’s Health Insurance Reimbursement 101

Posted on Tue, Aug 11, 2015

The Sjögren’s Syndrome Foundation (SSF) knows that obtaining healthcare and dental reimbursement can be a major challenge. Having Sjögren’s places a high enough burden on patients, and adding the barriers patients face in obtaining health insurance reimbursement increases that burden greatly. These tips below should help you increase your chances of success when requesting reimbursement and appealing denials for a claim. 

Tips for Health Insurance 

SSF_Health_InsuranceKnow your insurance policy and what it covers.
  • Note whether prior authorization is needed for a specific therapy or procedure.
  • Understand co-pays and how much you will be expected to contribute to the cost.
  • Know whether your insurance company requires “step therapy,” which means you must try and fail one therapy before the next level of therapy can be covered. 
Make sure your medical records are accurate.
  • Maintain copies of your medical records. You have the right to receive copies of all of your medical records. Note that you can be charged a copy fee.
Include a Letter of Medical Necessity.
  • A Letter of Medical Necessity is usually written by the physician explaining why a therapy or other treatment is medically necessary. This can be included with an initial claim or included in the appeals process.
  • A Sample Letter of Medical Necessity for dental treatment can be found on the SSF website under “Brochures and Resource Sheets.
Know how your insurance company handles biologics if you are considering one.
  • Insurance companies can exclude a drug from coverage or it might be a “tiered” drug, meaning one that is designated at a certain level for how much the patient must cover.
  • If not covered, or if the patient coverage is too high, request an exemption along with an explanation about why you need the drug from your physician.
Always appeal denials!SSF_Apeal
  • Appeal a denial at every level. Most patients receive at least partial reimbursement upon appealing a negative decision from their insurance company.
  • Involve your doctor in helping you respond to a denial. 
  • Familiarize yourself with your insurance company’s guidelines and deadlines for appeal. This information is usually included in the denial letter.
  • Make sure you have the necessary documentation showing that your case meets the insurance provider’s guidelines and demonstrates medical need.
  • Maintain records of your communication with the insurance company and document every time you speak or hear from a company representative. Record the person’s name, date, time and key messages from the conversation.
  • Understand why you were denied, so you can address the reason(s) directly.
  • If you are communicating with the Customer Service office of the insurance company and are dissatisfied with the response, ask for a Nurse Case Manager or a Supervisor who might be more understanding of your situation.
  • When possible, demonstrate that treatment is more cost-effective than alternatives or non-treatment. 
  • If you are still denied following the final round of appeals, contact the advocacy or patient assistance program for the company that produces the therapy. Most companies have divisions that take applications for financial assistance for their therapies.

This information was first printed in the The Moisture Seeker, SSF's patient newsletter for members, and is one of the SSF Patient Education Sheets. 

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Sjogren's, Tooth Decay, Treatment, Punctal Plugs, Advocacy, Health Insurance Reimbursement

Ask the SSF Staff: Treating Primary vs. Secondary Sjögren’s

Posted on Wed, Dec 10, 2014

describe the imagedescribe the image Should I treat my Sjögren’s differently if I have primary vs secondary Sjögren’s? 

Thedescribe the image terms "Primary and "Secondary" were first used in the 1960s and were devised by researchers who wanted to distinguish between those Sjögren’s patients whose disease was not "complicated" by other major rheumatic or autoimmune disorders. When carrying out research, the investigators wanted to make sure they were looking at purely Sjögren’s  patients and not looking at outcomes for patients who had, for example, both Sjögren’s  and rheumatoid arthritis (RA). They thought that could confuse clinical trials looking at how well a specific therapy worked.  As such things usually happen, though, the terms began to carry over to general clinical diagnosis and medical discussions and thought patterns, and that's where everything became complicated and not helpful for patients and not even helpful for the clinicians treating them. It didn't always make a major difference for the research, either.

So, first, what do the terms mean? "Primary" has been defined as a Sjögren’s patient who does not have another major rheumatic and/or autoimmune disease and "Secondary" as a Sjögren’s patient who does. But as you can imagine, it's not always simple or easily apparent. If a patient has another major rheumatic, autoimmune disease such as lupus, RA, scleroderma or the autoimmune disease multiple sclerosis, they would have traditionally been categorized as have "Secondary Sjögren’s." The term "Secondary" has not been applied to the prevalent autoimmune thyroid diseases, however, which are common in Sjögren’s, and so the terms are somewhat tricky.

Also, investigators have confronted a dilemma when a patient has had Sjögren’s for many years and been labeled as "Primary" and then is diagnosed with another major rheumatic and/or autoimmune disease and automatically being re-labeled as "Secondary Sjögren’s."  And to complicate matters more, some clinicians have now started saying their patient has "Primary Sjögren’s” and "Secondary lupus"(for example) while others undiagnosed the patient from having "Primary Sjögren’s” and changed the diagnosis to "Secondary Sjögren’s." How confusing!

Does it really matter? NO - It certainly doesn't matter to the patient or the clinician treating a patient. It doesn't alter treatment, since treatment for these diseases is based largely on the clinical manifestations and symptoms. All patients should be treated on a case-by-case basis. 

Does the label mean your disease is more or less severe? ABSOLUTELY NOT.  If someone has labeled you as having "Secondary Sjögren’s," it does not mean that your Sjögren’s is less severe or secondary in importance to the other condition. It also doesn't mean that symptoms that were labeled as Sjögren’s symptoms previously are now symptoms of the other disease. Autoimmune diseases often overlap, and sometimes it's difficult to tell if a symptom is Sjögren’s or, say, lupus. In fact, Sjögren’s is the most frequent disorder that occurs in conjunction with other autoimmune and rheumatic diseases, so, again, your signs and symptoms must guide the treatment.

Does the label make a difference as to whether patients are monitored for specific complications or not? NO. Again, your management and treatment should depend on your manifestations of autoimmune disease. You might be labeled as having lupus AND Sjögren’s or rheumatoid arthritis AND Sjögren’s, and then your symptoms and diseases should be managed according to your specific case and with complications specific to each in mind.  

Traditionally, it has mattered to an investigator running clinical trials, but even that is now being called into question. First, diagnosis and pigeon-holing these diseases is not always easy or an exact science. Second, investigators didn't mind if patients with RA or lupus who entered clinical trials also had Sjögren’s  and thought it did not muddy the results of trying a new therapeutic. Why? Because, again, like clinical treatment, the trials were primarily targeted toward clinical manifestations - for example, joint pain, which can occur in several rheumatic diseases including Sjögren’s. While a few manifestations might be distinctive of one disease versus another, such as the joint damage that occurs only in rheumatoid arthritis, the results still were based on the manifestation.

The Sjögren’s Syndrome Foundation is trying to move the medical and scientific community away from these terms, because they usually are NOT helpful or necessary. In fact, they are most often used out of habit, and while we recognize that habits can be hard to change and it can take a long time for a majority to start using different terminology, the SSF is on a mission to accomplish this. Simply put, someone either has Sjögren’s or does not have Sjögren’s. Having another identifiable disease doesn't change the fact that the patient has Sjögren’s, and a somewhat arbitrary decision about which additional diseases and conditions might change a patient between "Primary" and "Secondary" no longer makes sense.
 
-Katherine Hammitt, SSF Vice President of Research

This article was first published in The Moisture Seekers, SSF's member newsletter.

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Diagnosing Sjogren's, Sicca, Sjogren's, Joint Pain, Treatment, Advocacy, Primary v Secondary Sjogrens

Subscribe via E-mail

For reprint permission requests, please contact us at info@sjogrens.org.

Donate

Help support the SSF's 5-Year Breakthrough Goal initiatives by donating.

Donate to Research

Follow Me

Posts by category

Some additional information in one line